Hi!
It’s looking like the drs are leaning toward decompression for my 6 year old. She has idiopathic Syringomyelia.
The syrinx were drained. It have returned and symptoms are bad again and getting worse.
I am looking for REAL AND HONEST descriptions of post-op in the hospital and at home recoveries.
I am really wanting to know what my daughter is in for with recovery if we choose to go ahead and do this.
Thank you so much for your time!!!
Jen
Hi Jen
I can only speak of my recent surgery. Currently almost 3 weeks post decompression surgery and 28 years of age.
I was warned before surgery I needed minimum 8 weeks off work and driving. That when coming through surgery I would be vommitting for three days straight and the pain would be bad pulling on the staples of the wound but then it would be like a tap and switch off.
They explained it would be a minimum week in hospital and there would be no promises symptoms would go away after surgery but without surgery paralysis etc were realistic expectations.
Well the positive of my story is I was given lots of anti nausea when In surgery.
I have not thrown up once, I was up and eating the night of surgery and a trip to the toilet. A shower the morning after. Home from hospital on day 4. Lots of symptoms have gone or subsided
Pain although not always friends has been manageable
I have weakness in both my arms and legs but working on building strength
Have numbness still in the face but improving
Neck is stiffer turning to the left then right but also working on this.
So far my experience has been a positive one for what it can be in this circumstance
Feel free to read my story on my page
Very best of luck and thoughts are with you for your little one
Mel xo
Hi Jen
I can only speak of my recent surgery. Currently almost 3 weeks post decompression surgery and 28 years of age.
I was warned before surgery I needed minimum 8 weeks off work and driving. That when coming through surgery I would be vommitting for three days straight and the pain would be bad pulling on the staples of the wound but then it would be like a tap and switch off.
They explained it would be a minimum week in hospital and there would be no promises symptoms would go away after surgery but without surgery paralysis etc were realistic expectations.
Well the positive of my story is I was given lots of anti nausea when In surgery.
I have not thrown up once, I was up and eating the night of surgery and a trip to the toilet. A shower the morning after. Home from hospital on day 4. Lots of symptoms have gone or subsided
Pain although not always friends has been manageable
I have weakness in both my arms and legs but working on building strength
Have numbness still in the face but improving
Neck is stiffer turning to the left then right but also working on this.
So far my experience has been a positive one for what it can be in this circumstance
Feel free to read my story on my page
Very best of luck and thoughts are with you for your little one
Mel xo
Hello, My daughter had the surgery November 15,2011. She had Chiari type 1 (12mm). I will tell you my daughter has been given a new leash on life. The surgery was 4 1/2 hours long. In the hospital they kept her very comfortable. She was in ICU for 3 days and then brought into a regular room for another 3 days. By day 2 they had her up and walking. She will say she had no pain just uncomfortable in the back of her head. Once we got home I stopped all pain medicine because she never complained of pain just a weird feeling in the back of her head. She started PT right away also which I feel helped so much. It is very important that she continue to do exercises for her neck. Nicole is 4 months post op and doing wonderful she just joined soccer and is so happy. Her headaches are far a few between, She went yesterday to see her dr for a check up and he said the surgery was a complete success. I know you are feeling so confused but as a mother I can look back now and say I made the best decision I could have for my daughter. if you have any questions please feel free to contact me.